Body Impolitic

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Sometimes, Aging Isn’t Pretty

Debbie says:

I’d like to believe that a “retirement community” would be one of the few places in the Western world where we could age however we age, and not worry too much about how we look, or how changes in what we need affect how we are treated. But the Harbor’s Edge retirement community in Norfolk, Virginia–and others around the country–are proving me wrong, according to Paula Span’s post on the New York Times’ “The New Old Age” blog.

… last spring, managers declared the River Terrace and two other dining facilities at the community off limits to anyone but independent living residents. Assisted living residents were told to use their own small dining room; nursing residents were restricted to theirs.
Family members were instructed to join them there. But longtime friends — and several married couples — who lived in separate parts of the facility could no longer share meals in the main dining room. Those in assisted living or nursing care also were also barred from community events like the Fourth of July celebration.

…

Questions about how much access and autonomy residents have in such complexes, and who gets to decide, have arisen around the country, said Susan Silverstein, an AARP senior attorney.

An assisted living facility in Colorado attempted to keep walkers and wheelchairs out of a communal dining room; in 1996 a state appeals court ruled that action discriminatory. In San Francisco, an assisted living resident who used a walker sued in 2008 when administrators decreed that she couldn’t use the dining room buffet but instead had to be seated for table service. That suit was settled.

Perhaps the most disturbing sentence in Span’s article is this one:

Moreover, managers believed that the policy of letting residents of various degrees of disability dine together violated Virginia state regulations, Mr. Volder said, and left Harbor’s Edge vulnerable to lawsuits or revoked licenses.

The Virginia state ombudsman “could find no statutes” bolstering his position. Legally, the facility’s rights are a morass, because the various levels of care are under different regulatory agencies.

But beneath the legal problem is the clear implication that somehow “healthier” people have a right not to have to rub shoulders with people whose needs are greater is chilling. Some residents feel they “should be able to have what we call quiet enjoyment,” in other words to eat in a room which excludes people who sometimes vomit, or people whose wheelchairs can get entangled with the table service and potentially cause a crash. The article ends with a resident’s son saying, “I can take [my father] to any restaurant in Norfolk or in the state of Virginia, except the one in the building he paid $600,000 to move into.”

No one enjoys sitting at a table with someone who is visibly ill. More to the point, however, no one enjoys being the person who is physically ill. When we isolate people because (for aging or any other reason) they are sometimes less pleasant to be around, we are lying to ourselves and isolating our own futures. We are telling ourselves “that won’t happen to me,” or just possibly, “if that happened to me, I’d know enough not to go out to a nice place.” We are prioritizing our own comfort over compassion.

And it certainly won’t happen to everyone. Some people will die before they ever lose control of bodily functions. Some people would rather die than go out if they might lose control of bodily functions. Others will weaken to the point where they don’t want to go to the nice dining room, even in a wheelchair.

Most, of course, will never be able to afford the places that enforce these choices. People without $600,000 to spend on their old age go through whatever unpleasant parts of aging they go through in some less upscale place–and maybe a less discriminatory one.

Nonetheless, the toxicity of Harbor’s Edge’s policies should not be ignored. We have done a horrifyingly good job, as a culture, of making death disappear, so that comparatively few people ever see dead bodies, let alone touch them, let alone handle and wash and relate to them as people have done with dead loved ones for millennia.

So now that we’ve walled off death, let’s wall off the precursors, the ugly parts of disability, aging, and illness. Let’s avert our eyes and sit in another room. Prioritizing comfort over compassion is fine as an occasional choice; as an enforced life choice, it’s both cruel and self-destructive. As a commercial choice, it’s probably profitable– if Harbor’s Edge wants new customers, showing them what could happen to them is way too close to saying, “Move here and this might happen to you.” Nonetheless, I think everyone (including, in the long run, the community) would benefit from more compassion–and more honesty–and less discrimination.

Thanks to Janet Lafler for the pointer.

7 thoughts on “Sometimes, Aging Isn’t Pretty”

I read that blog posting about five minutes after it went up, and was consequently one of the first commenters. One key point is that the residence was developed not by a nonprofit and not by people with experience in aging and retirement communities, but by real estate developers. I think they do not have a clue and apparently they don’t have good advisors, either.

I am sorry to say that it is common for the residents of retirement communities to have social hierarchies based on how healthy each person is. I am certain that this arises from fear of becoming less healthy and less able – and there’s a pretty good chance of becoming less healthy and less able as one ages.

I’m hoping that when this one gets to court (or to regulators), the judge(s) or regulators laugh. I was totally fried by the suggestion that it would be okay to use a standard such as “can this diabetic resident make appropriate food choices?” to determine whether a person residing in assisted living can eat in the main dining room – because they’d never try to use that as a standard for a person living in independent living.

My very limited experience visiting a half-dozen or so facilities over the last 6 years suggests that rehab centers and nursing homes also have separate dining areas for different groups in their total population based on how much assistance they need when eating. All such places I’ve toured were very definitely less upscale, and all accepted people in wheelchairs in the main dining room.

The Alzheimer’s wings I’ve seen in such facilities have their own dining room and those patients lived in a locked, controlled area where they only interacted with fellow Alzheimer’s patients, their caregivers, or people there specifically to see, interact with, or entertain them.

The rehab center/nursing home my dad was in last summer had a separate dining room for the people who needed 1-to-1 feeding assistance while the main dining room was for people who were pretty much able to feed themselves, sometimes with a little coaching or extra help. In that dining room, there were 4-5 caregivers for 25-30 diners.

The patients/residents were also welcome to have their meals in the community room if they wanted to eat separately from the group but not in their room. There were options, giving patients choice on a meal-by-meal basis, but there was some enforced separation as well.

I was very saddened by the adversary type relationship that my friend’s father experienced during the last years of his life in a retirement community. One could only enter the community and buy an apartment if one was able to negotiate stairs. This was presented as a fire safety issue.

There were three levels of disability in the community: fairly independent living in a one or two bedroom apartment with the nursing staff nearby, more classically nursing home type accommodations which consisted of one room sometimes shared, and a more hospital like area– which was used as the stage right next to death. Not too many people stayed there long.

There was tremendous pressure on the residents to demonstrate that they were still capable of living independently. My friend was horrified when the administration banned walkers from dining room. It was as if they were trying to make the residents fall so as to get them out of their apartments and into the cheaper wing. Incidentally the administration have a profit motive to move the residents from the more independent the less independent area. The administration could resell the one and two bedroom apartments so once a person lost their apartment they could never come back.

One of the selling points of this retirement community was that once accepted into the community and allowed to purchase an apartment, for a fixed amount each month the resident would always have care at whatever level she or he needed. But the “care” didn’t necessarily include caring.